25 June 2011

FAQ's regarding Feeding Bennett

:::EDIT: Heather, I can feed Bennett avocados and actually have one in the fridge as I type to feed to him at some point. But I haven't really known how to feed it to him, (spoon, guac, etc?). So, I LOVE the idea of mixing it in yogurt!! Great idea!  I will plan to do that!  And thanks for your story, Nicole!:::

I so much appreciate the questions I've received on the blog.  It means alot that people care enough to read...and even more that they care enough to ask!  So, here are the answers to some of the questions I've received both online and in person...

1.) Isn't the short term goal to get Bennett to feel hungry and WANT to eat and then you'll be able to go from there to tweak what he eats and hopefully eventually be able to serve one meal to the family instead of having him eat something different?
Yes!  Our goal is to get Bennett to be hungry, want to eat and sit down and eat what we eat.  Through this regimented program, we are becoming the "regulatory" system for Bennett that his body does not seem to be able to be.  We are helping him get used to eating at certain times, teaching his body to crave nutrients that those times.  And we are helping him be confident with eating by giving him foods we know he can eat successfully.  Over time, with the help of Speech Therapy teaching him how to chew and swallow properly, we will introduce more foods - many of the foods we eat at our meals.  Bennett dictates what he wants to eat as much as possible.  However, we want to encourage him to try new foods, some he might not choose himself due to his sensory issues.  If we notice he doesn't like a food (such as tomato-based foods like Spaghetti-O's, we take it off his menu).  Due to his need for calories, some foods, such as apples, even if he loved them and ate them all day, cannot be on the menu for every meal as he would never eat enough apples to meet his daily calorie need.  So, our system right now is to teach his body a hunger cycle, teach him how to eat a variety of foods, increase his intake and help him enjoy the process of eating.  Over time, we will slow give him more and more control and allow him to eat naturally on his own.

2.) Is there any concern about the very high levels of sodium in the Kraft Mac and Cheese?
Believe it or not, no.  In fact, Bennett needs more sodium that he could ever get from his food.  We actually have to give Bennett an entire 1/2 tsp of salt per day (usually dumped in his nightly tube feed) to help him meet his daily sodium need.  This is because Cystic Fibrosis causes him to loose more salt than he body needs to lose.  In addition, CF keeps him from fully absorbing the important nutrients and salt most people can typically get from their daily diet.  While Bennett takes enzymes to help improve his absorption, we still have to give him vitamins ADEK and a 1/2 tsp of salt every day.  Besides needing more salt to stay well, Bennett also needs more fat, protein and calories than a child his age. So, Mac and Cheese - even a McDonald's Hamburger - are some of the best foods Bennett could be eating!  Seriously.  Doctor's orders. 

3.) Why doesn't Bennett eat?  Is it because of Cystic Fibrosis?
Bennett's feeding issues are due to complications of Cystic Fibrosis and made more difficult by Cystic Fibrosis.  For the first month of his life,  Bennett had tubes shoved down his throat, likely causing him to be orally defensive towards things in his mouth (causing sensory issues).  This slowed his natural infantile progress towards learning how to eat.  He may have also had a less than strong suck causing him to wear out too quickly when taking a bottle.  In addition, he had reflux issues and GI issues that likely made him resistant to wanting to eat.  These are all early complications of his Cystic Fibrosis.  Many children with CF who do not have early issues, such as Bennett did, do not show these sorts of oral/motor and sensory problems which can delay children's ability to suck or chew food.  CF is not directly the cause of his feeding issues but are certainly related.  CF complicates things even more because children with CF struggle with malabsorption and need 20-50% more calories than an average child their age.  This means when Bennett does eat, he can easily get tummy aches and diarrhea if his body does not absorb his food properly.  And, because he needs SO many calories, even if he ate by mouth, he would struggle to eat enough to keep growing strong.  Did CF cause Bennett's feeding issues?  Not necessarily.  But without CF, Bennett would likely have learned to eat and continued to eat like any other child.
4.) I don't know whether that means those kids needs to stretch their tummies more, like Bennett, so that they can take all the food that they need (in other words, they need to learn to "overeat" so that they stay healthy), or whether success is a partial wean, with additional calories supplemented via tube? 
  This is vital to keeping himself well.  Statics show that kids with CF who are in the 50% percentile and over are more likely to stay well and have bigger lung function.  At this point, Bennett still hovers the 25% percentile.  Eating may be a chore but it is something we want to teach him to do, whether he wants to or not.

5.) Four times a day is alot.  Can you make Bennett's eating times flexible?  What if you missed one?
Bennett's feeding times are as flexible as possible considering we must complete 4 feeds per day (in order for him to eat enough calories orally).  But since he has to eat every 2.5-3 hours, take a nap, get in two 40-minute vest treatments and get in the bed by 8pm, we're pretty much left with having to feed him at 8:30am, 11:30am, 3pm and 5:30pm.  We have been advised that we can miss a feeding here and there.  But the strength of the program is consistency.  (We pre-plan in advance to miss one meal a week so we can make it to Church.  We're hoping God will give us grace on that one. :))

6.) Can you do his feedings outside your home, like at a restaurant or friend's house? 
Yes, we can utilize the protocol in any situation in which we are willing to allow Bennett to scream at the top of his lungs should he not want to "take his bite".  So, needless to say, the best place to feed Bennett is at home.  The benefit of feeding him at home is that we have control over distractions that might keep him from wanting to eat. Bennett is wonderful at using the slightest distraction to keep him from eating.  And if he can't find a distraction, he likes to become one himself.  (Today, I got so tickled with him that it took about 3 minutes for him to take his bite.  I can't help that he can make me explode with a smile by merely giving me a look with his eyes.)

7.) How long do you have to do this feeding protocol? 
We are planning for the long haul.  We expect to do this for a year.  Hopefully less.  But it takes some families years before their children are able to fully eat on their own.  Every day.  Every week.  Every month.  Holidays and weekends included.  As Dr. Phil says, "you do it until."  We're willing to do this until he eats on his own.


  1. thanks for taking the time to explain all of this!!! :-)
    CF certainly adds a twist to the tube-weaning and tube-feeding journey. i had no idea about the need for extra salt. !
    (btw, a mom in the tube community who i actually spoke to by phone - i know, amazing - has done a lot of research into the medical literature on CF and found that *exercise* is also vital for health and lung function. passing it along!)
    i can't say i'm a fan of the behavioral methods, or of the strictness and the way it changes the mother-child dynamic, but i very much appreciate you telling your story and being so open to other people's input. you are fighting a different battle than many i know, given the particularities of CF and bennett's need for so many more calories than is typical. i wish you the very very very best in your journey with both your boys. and thanks again for letting this conversation happen. i have learned a lot, and that is always, always a blessing.

  2. ok, so i've been thinking about this whole thing some more, since you are giving your readers a real porthole view into the feeding clinic experience.
    1) what happens if he decides he's no longer bribeable? if he no longer cares that there's no TV or no toy, or the toy you have is not worth going against his own sense of self? i assume the program doesn't allow for a "if you don't eat, you don't eat" response?
    2) when does the program envision him recognizing appetite (ie, when do they cut calories?)
    3) why do they not allow a child to receive food when they show actual, self-motivated interest? what's the reasoning behind that one?
    so many questions! aa! let me know if i should just write to baylor ;-)


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